Native American settlement highlights DNA dilemma

A university has agreed to pay 41 members of a Native American tribe $700,000 after using DNA for purposes it was not donated for. As well as ending a dispute between the Havasupai people and geneticists at Arizona State University in Tempe, the settlement highlights a dilemma facing much modern genetics research.

Scientists who work with human subjects must obtain informed consent, making sure the participants understand and agree to the purposes of the research and the risks it might entail. This process does not always sit well with the demands of genetics research.

Direct physical harm is unlikely but the potential for privacy violation is great. DNA can also turn out to reveal so much about disease risk, ancestry and other aspects of biology that researchers often find themselves itching to use people's DNA to answer questions that could not have been predicted at the outset.

Such curiosity is what got Arizona State University into trouble with the Havasupai. The disputed DNA was collected in the early 1990s to shed light on the high rates of diabetes among the Havasupai, but researchers went on to use it to probe their ancestry, which angered tribe members.

Tough to track

Since then, "things have really progressed", says Bartha Maria Knoppers, director of the Centre of Genomics and Policy at McGill University in Montreal, Canada.

Nowadays, if researchers want to use samples to study a condition not initially specified, they must get permission from the participants – something that did not happen with the Havasupai's DNA. Another option is to obtain a waiver that usually requires all the data to be anonymised.

This approach is not ideal for either researchers or volunteers. Participants can be difficult to track down, and once the link between DNA data and the donor has been broken it becomes impossible to collect extra information, such as a disease's progression.

Matthias Wjst at the Institute for Genetic Medicine in Bolzano, Italy, says that researchers could also do much more to keep study participants abreast of how their DNA is being used, perhaps by making better use of social networking tools.

PGP's bioethicist, Jeantine Lunshof, says this "open consent" approach is the only honest way to collect DNA. "We need to tell people that there is an uncertain future."

Others are more cautious. "It's an intriguing model, but I think it's totally un-generalisable," says Ellen Clayton at Vanderbilt University in Nashville, Tennessee. Researchers ought to focus on improving ways of protecting genetic data, not removing them, she says. "Without the trust of the public this isn't going to work."

Dan Vorhaus, a biotechnology lawyer who advises PGP, agrees its approach isn't for everyone. He suggests that some researchers asking for open consent could limit who can access participants' DNA, decreasing the chances of misuse. "I don't think it's the case that we need to abandon all attempts at privacy," he says.

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Havasupai people visited Tempe to say prayers over disputed blood (Image: Jim Wilson/The New York Times/Redux/Eyevine)